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Thursday, August 22, 2013

You would think that would be easy to answer. But, I have to go through a quick list in my head before I bark out my reply.

Does this person know me?

Does this person know me well enough to know I have fibro?

Does this person even care that I have fibro?

If this person knows I have fibro, are they asking me how I am politely or are they concerned about my fibro?

The other day, I had to go with the Disabled Guy to Home Depot because he was picking out paint. I didn't want to go, but I also didn't want seventeen phone calls in a row of him asking me various paint colors that all had ridiculous names and didn't look anything like their names would indicate. And we were a few miles from home when I realized I didn't take any Vicodin before we left the house.

Does he care? Not really. (he doesn't even ask me how I'm doing or feeling).

So, let's talk about my pain...

I am in pain every single day. Every day. No matter what. And I would rank that everyday pain at around a three or a four. I can tolerate it. I don't always need to take something in the daytime (other than my one single muscle relaxer in the morning- which is prescribed for me in that dose- one 10mg tablet in the AM, two 10mg tablets at night).

Now, this isn't going to be as easy as "the pain is [this number] on the pain scale" because even a good day can turn bad even if my pain levels don't increase. I might swell up. My skin might start to itch. I might have a hot-spot flareup. The fatigue might set in and drag me to the floor.

When I refer to "having a flareup", I actually mean that my pain is so bad that I must take something in the daytime. Pain. Extreme pain. Pain so bad that air brushing by my skin hurts. If something touches me, it sends electrical jolts of pain in a shock wave from the part of my body that got touched.

When I refer to "my skin itching", I actually mean that I feel like my tendons and muscles are trying to escape through my pores. The itching is under the skin, as if my muscles are on fire under the surface. Scratching doesn't help- it actually hurts. Sometimes rubbing the skin with the flat of my hand helps, but who can do that ALL OVER THEIR BODY? Not me.

Some days, the only solution is nudity and two fleece blankets. I'm not telling you anything you haven't read before. But I just wanted to discuss my pain... Mostly because I've had more flareups this year than I have since they started treating me for fibro.

I suppose the good news is, that despite having pain issues at the faire, I haven't had a meltdown like I did last year. We've got two weekends left in this season. It has gone by way too fast again. Except for Fridays, which crawl by at a snail's pace.

But, to answer the question: "How are you?"... well, that depends on a few things. But let me tell you this- no matter what I answer (which is almost always: "Fine"), I am in pain. I am in enough pain that normal people would cringe. I am always in pain. Always. If I'm standing up, sitting down, or if you somehow end up in my bedroom and I'm in bed under two fleece blankets and my clothes are not on my body... I am in pain.

Despite that pain, I still take awesome photos. Because I can. Because that's what I do. Because I love to take photos. And I love my subjects (people and animals)... Because when I take photos, I feel like I'm contributing to something. Because when I take photos, I can forget how much my body hurts for those few minutes. But mostly, I just love doing it.

Thursday, August 1, 2013

I've been meaning to update this blog for the last four weeks. But I've been so bloody busy! Why's that? Because I've been made "official". I'm now one of the faire photographers (there's a team of us). Basically, I'm doing everything I've always done- taking photos of practically everything, including the jousts- but now I get let into the loop on special events and now I can say: "I'm working here!" and mean it.

But, let's us get to the important fibro stuff... After opening weekend- which was an experiment in HELL for pain- I didn't have a huge flareup of pain. In fact, it wasn't even the pain that bothered me. It was the fatigue. The exhaustion just kicked me in the side of the head and wrestled me to the floor. I was so tired that I declared every day a nap day. The experiment in hell for pain was in my feet. I wore the wrong kind of socks, which caused me all sorts of discomfort. "Wrong kind of socks?" you ask. Yes. I wore some that were supposed to help with various foot issues. The problem is, they have a lot of Spandex in them.

These socks, actually. (mine are black and pink). And they're good socks. I'm wearing a pair right now with my Doc Martens hiking boots. But on a day that was 90+ degrees with high humidity, they were the worst thing ever to be stuck wearing for 14 hours.

And now that we're going on our fifth weekend of faire, I've learned a few things... one, wear good socks. As close to 100% cotton you can get. Two, even if I'm in pain from wearing leather shoes and walking all weekend, I still need to force myself to wear shoes at home on Monday. Even if I'm not going anywhere. Last year, I'd spend all of Monday and most of Tuesday wearing slippers and whining about how much my feet hurt. This time, I get up, drag myself around- whining as much as possible, of course- and I put on my hiking boots (I have shoes that I wear specifically for the ren faire, because they look almost period-correct... ALMOST). And I recover much faster.

I still whine as much as I can, of course, because goddammit, I have a chronic pain disease.

Now, that's not to say I haven't had a few bad days. I always have those. The days when even my clothing hurts my body. I hate that feeling- when I put on otherwise comfortable clothes only to have the fabric feel like hot sandpaper or that the pressure of the fabric against my skin feels like a painful bruise.

In fact, I schlepped my ass around the faire all day on Sunday in the throes of a flareup. But, I took Vicodin every six hours and I split my three muscle relaxers a day evenly instead of taking one in the morning and two in the evening. That seems to help. (and my doctor said it was okay to do so). I also sit down as much as possible, because I wouldn't be me if I wasn't putting my butt down on a flat surface on a regular basis.

Now, to end this on a happy note, here are a few of my 365s from the faire.

Opening day was so hot that at around 130 PM, I had to loosen the laces on my bodice. And around 4 PM, I had to take it off entirely. I hate walking around without a bodice at faire, it feels wrong, but hey, when you reach that point, you gotta do what you gotta do.

Here I am with Kyle ("the one with the eyes"), and Duchess. It was her birthday! And we're at the end of the day, near the gates.

It has taken me three years to get this shot. "Lady Gwendolyn" (Tricia) is sneaky and always seemed to disappear before I could get her in my 365. She makes horse tack. Age of Equus is what she calls her leather work.

This was taken last Sunday. I'm with the "Lord Mayor of Bristol" and one of the Bristol Buskin Frolic guys (I don't know his character name!) and together, they call themselves "The History Bluffs". We did an impromptu photo shoot after I shot the historical costume contest. And then I had them be in my 365 with me (Duchess- from the other photo- was my human tripod. She's another Bristol photographer). This would be the day that I muscled through a flareup all day.

Do you see a theme with those photos? I mean, aside from my silly hat (hey, I made that hat! Second hat I ever tried to make).

I'm smiling. A real and full smile. (even with Vince, where I'm so exhausted I wanted to fall down).